If you only did one test, which of these would it be?

[Wombat140]

So I've been corresponding with a private lab that might run PANS-related tests and so on, but they're quoting astronomical prices. This would all be out of pocket - we don't have insurance and the National Health Service wouldn't cover it as PANS isn't widely recognised yet and anyway a doctor hasn't ordered the tests.

So, if you were only doing one of these tests, which one? If you were doing two or three, which two or three? If a test actually enables us to do something that'll help to fix the problem, then it's worth every penny. But we haven't the money to try things at random without knowing which are the most important. (Do any of them cover several things, for instance is there any test that would be positive if I had either strep OR mycoplasma? That might narrow things down a bit - if I had that positive test, you see, my doctor might then feel she had a respectable excuse for sending me to an NHS specialist and for further testing.) Remember please, I don't know what a lot of these things even ARE, I've only seen the names given as tests useful for certain things.

Sorry to keep asking for more help. My OCD's beating me down and I'm just not in much of a condition to make anything of all the jigsaw puzzle of information by myself. By the way thank you all for giving me the information that allowed me to put together this list of possible tests in the first place!

Here's the list of possible tests I sent the lab, with the prices they gave - I've left in the things the lab said they didn't have, so you can see why I seem to be leaving out some obvious things:

*Miscellaneous:*
Homocysteine £87
Blood ammonia £80
Blood sulphate we do DHEA Sulphate £72
Zinc £61
Copper £64
Magnesium £57
B6 £128



*PANS/infection/immune system related:* We dont do these ones
Strep ASO
Anti-DNase B Titer
Streptozyme

Antinuclear Antibody Test £62
CD4 £228
"Immune Panel" - IgG (Subclass 1, 2, 3, 4 for total immunoglobulin levels), IgE, IgA and IgM £84
CD57 (something to do with Lyme disease) We do not do

Mycoplasma pneumonia £60
Parvovirus £92
Coxsackie virus we do not do
Epstein-Barr virus £223
Human herpes virus 1 £75

Lyme disease, and, if so, which test? (I know some are more accurate than others).
Babesia
Bartonella
We do Lyme Disease (Borrelia ABS) Igm £65

 

 

Edited February 5, 2016 by Wombat140

[4Nikki]

Look at this site it has a diagnosis flow chart http://bestbloodtests.co.uk/general-blood-tests/

[4Nikki]

There are lower priced alternatives do a search for cheap blood tests uk.

[Wombat140]

I can't see the flow chart, where is it? Also, all the five providers I can see mentioned on that site seem to charge amounts similar to that.

 

I suppose you have a point, I only chose this lab because Dr Goyal recommended them so I felt I knew they were reliable. But I think he used that particular lab only because they were just down the road from his clinic.

 

Searching for "cheap blood tests UK" is not as easy as it sounds! About half the results I got were in America, the first one was a crank site that did tests by "bioresonance" (even if it works, it wouldn't cut much ice with a doctor), and again, none seemed to be much cheaper than what I listed above. (If you actually found something different, I'd be very grateful if you'd tell me what and where!)

 

So again: given that we can't afford to do all of these, which ones are the priority?

Edited February 6, 2016 by Wombat140

[4Nikki]

Here us the chart:

 

https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf

 

I was using my phone browser with a quick search and didn't look at the specific tests just there were a lot of hits on cheap alternative blood tests in the uk. The specific test do seem to be on the high side. DD insurance covered most of those test,

[Gpookie]

Cunningham Panel and IgG supbclasses...

[Wombat140]

Gpookie - thanks very much, I'll go by that, assuming that I can get it done at all on the day! (I'd been thinking the IgG etc. panel sounded like a thing that would cover a lot, but didn't know, was only guessing.)

 

4nikki - ah, I see, thanks. Your first post had a link to one of the "cheap blood test" websites by mistake, rather than the flowchart one.

I'm not sure how relevant that chart is to a case that's been going on for years, rather than one that's only just started - I mean, are strep culture tests valid when this has been going on for years? Not that I've ever actually had one done so far. Or a steroid burst, either - I don't think that's likely to happen, the dose Dr Goyal once gave me was 14 days' worth (I think) of only 5 mg of prednisone a day, and he was a bit wary about that. (Didn't do anything, unsurprisingly if the correct dose for a "burst" is supposed to be 1-2 mg/kg.) Round here the attitude is that you don't muck about with steroids. Admittedly, the state I'm in now is pretty much a life or death situation... but the weird double standard, you know; being unable to do anything at all for a mental patient is the expected standard, so if you can't do any better than that, it's OK! (Sorry, rant over!)

[Cleopatra]

Yes. The strep titer test can be useful. But, keep in mind, not everyone makes antibody titers to strep and it won't show on the labs. I would order antibiotics online.

[Wombat140]

Been on 'em, Augmentin and (separately) azithromycin, see my sig. No good. Does that rule out all possibilities of it being an infection, or are there things that don't necessarily respond to that? Anyway, thanks for letting me know that things like strep titers are still applicable, that's useful to know.

 

(Also, you buy antibiotics online?? I've always heard that you have to be crazy to buy any kind of prescription medicine off the Internet. Or have you found a legal supplier? I don't know what the rules are in America so I don't know whether it's possible to legally sell prescription-only medicine without a prescription there. ...Written like that, that doesn't make any sense, but whatever.)

 

I like your avatar.

[Cleopatra]

You need to find a really good pandas specialist because there are many many different types of infections and different types of antibiotics that they will respond to. Sometimes you have to find the right combination. Sometimes you need to stay on them high dose and or long term. I don't think that you can treat this by just throwing a couple of basic antibiotics at your kid. also, after a while these kids are beyond refractory. Their immune system and autoimmune response goes on autopilot and there's no infection at all, but, they keep making anti-bodies like in my daughters case.

I have never purchased antibiotics online. But, I have purchased other medications from Canadian pharmacies online. I have been told by a reliable sources, friends, that the antibiotics sold for fish are the same as the ones given for humans. I know people with lime who can't get medications except for this way.

[Wombat140]

I'm not my kid, I'm me.

 

Can't find PANDAS specialist in this country (UK).

 

Also would a PANDAS specialist be any help anyway if it's in fact Lyme disease or relatives, or vice versa, would a doctor who knows something about Lyme disease be any help with PANDAS?

 

edit: edited, sorry, lost temper a bit, not personal, sick of being sick and sick of explaining everything over and over again to different people... there's so much stuff I can't put it ALL in my sig and if I did nobody'd have time to read it. Thanks for trying to help.

Edited February 19, 2016 by Wombat140

[PowPow]

Wombat, have you ever tried prednisone or steroids for anything else since 2003 onset? If you can think back- and you ever did (for another illness) did it help?

I am just wondering, as you tried a few antibiotics without affect. Also, the way you describe tics is similar to my child and steroids help with those for her~ as they seem to be of a physical expression of OCD. She also has the sound sensitivity (hyperacusis?). We have found that my daughter has clear autoimmunity and that avenue of treatment has been the most successful.

Just an idea. Have you seen this article and maybe tried to contact the authors?http://www.discoverymedicine.com/Sarosh-R-Irani/2011/05/17/autoimmune-encephalitis-new-awareness-challenging-questions/

 

i wish i knew more to help you

 

 

or

[Wombat140]

No, I haven't. I've had one course of 5mg/day for a week or possibly two weeks (can't remember) from the one PANDAS doctor I did see (who's no longer practising). That didn't seem to do anything, but I'm told that's a minute dose in PANS terms. I get the impression that the kind of dose normally used for "steroid bursts" for PANS (1-2mg/kg?) would be considered huge and highly risky over here, you'd need to be very ill to have that. I might check my facts on that with my family doctor though.

 

Thank you so much for that article, I didn't know about those people! I think I'll write to them and ask if they could advise or else if they know anyone who could. (I seem to remember that last time I was writing to possible people, half of them didn't reply... but I'll give it a try!)

 

Thanks very much for having obviously read my sig in detail, your reply told me much more that might bear on the situation than most of the ones I've had recently! also it's just nice to have somebody listen at times like this...

[Wombat140]

No, I haven't. I've had one course of 5mg/day for a week or possibly two weeks (can't remember) from the one PANDAS doctor I did see (who's no longer practising). That didn't seem to do anything, but I'm told that's a minute dose in PANS terms. I get the impression that the kind of dose normally used for "steroid bursts" for PANS (1-2mg/kg?) would be considered huge and highly risky over here, you'd need to be very ill to have that. I might check my facts on that with my family doctor though.

 

Thank you so much for that article, I didn't know about those people! I think I'll write to them and ask if they could advise or else if they know anyone who could. (I seem to remember that last time I was writing to possible people, half of them didn't reply... but I'll give it a try!)

 

Thanks very much for having obviously read my sig in detail, your reply told me much more that might bear on the situation than most of the ones I've had recently! also it's just nice to have somebody listen at times like this...

[PowPow]

the 5 mg of prednisone is not really anything for this situation, honestly. So do not let the lack of effect of that put any bearing on whether or not it would be helpful.

My daughter's first dosing for this was 60 mg! & she was 10 She was actually given a 5mg of prednisone dose for a week by her LLMD and we saw it do nothing. The 60 mg tapering dose was ordered a few months later and was the first real breakthrough for her. Also, we did not see the effect from the 60 mg (every day for a week) (& then tapering down over a month)- until about 10 days into the steroids.

So, again, this may be an avenue for you, since, at least -- it is something different. Now, how to get the medication? That may be difficult, hopefully not.

Also, did you ever try clomipramine? I think I mentioned that to you, before. My daughter, who is now 18, really thinks it helps take everything (OCD, anxiety, sensory stimulation) down a notch. She is only on 25 mg , which is a baby, teeny, tiny dose. But it seems to work for her. She was on much, much higher doses and I think it was not helpful, possibly harmful for her at those doses.

OK & I mention this at the risk of being totally frustrating and annoying-- my daughter has learned to meditate. She taught herself through youtube videos. She has gotten it down so well that she has been able to filter out the negative stimuli that previously would have triggered a huge OCD spiral and the tics that go along with it. It is not 100% and she still has difficulties, but that intervention has really helped her. Granted, she has had much medical treatment before she even got the point where she could even remotely consider any therapy, let alone mindfulness (with the help of an excellent ACT-therapy psychologist) and then self-taught meditation.

I will be quiet now-- if just learning to meditate would help it all go away, I am sure you would have done that already....but I feel like i must mention it. I thought it was mumbo jumbo when she first got into it, but now, I am so grateful for this . it is a great gift she gave herself, truly.